Gluten Challenge Before Endoscopy

Today being a particularly hard day, I'm really wondering if the endoscopy is worth eating gluten. My consultation is not until the 23rd, and I don't know how long it would take to schedule it after that.

My symptoms are extreme fatigue, muscle weakness and nausea.

Do you think it's worth it to keep going? I feel like I'm torturing myself.

Can you call for urgent or cancellation appointment? Sometimes your primary can request an urgent appointment if you can't.

I don't recall - did you already have positive blood tests? If not, I'd suggest getting a full celiac blood panel before you go gluten-free should you decide you it is not worth waiting for an endo to go gluten-free.

Can you call for urgent or cancellation appointment? Sometimes your primary can request an urgent appointment if you can't.

I don't recall - did you already have positive blood tests? If not, I'd suggest getting a full celiac blood panel before you go gluten-free should you decide you it is not worth waiting for an endo to go gluten-free.

My blood tests were negative, but my doctor still wants me to have the endoscopy. I will call and ask about getting in earlier -- that's a good idea.

I'm really surprised at how my reactions to gluten are getting worse over time.

Increased lymphocytes found by endoscopic biopsy along with symptom improvement once gluten is removed could prevent future damage and lifelong health problems.

Is there a word or 2 missing from this?

Given it is difficult for many to obtain diagnosis with current medical testing - why should someone decrease the chances by removing gluten before testing is complete?

Seems like a perfectly reasonable rhetorical question to make a reasonable point.But it's not really rhetorical when there actually *have* been Celiacs whose level of misery during a gluten challenge *has* altered their testing/challenge schedule - aka "decreased their chances". It's not unheard of and if we want detailed reasons we'd have to ask those that did so.

I can apologize in advance if you take this personally but it's a logical inconsistency to say "eat gluten til the last minute for endoscopy/biopsy diagnosis or the lymphocytes might be gone, though the presence of lymphocytes isn't diagnostic for celiac disease" (paraphrased, of course).

If a person removes gluten before endoscopy it can reduce the amount of lymphocytes detected in the biopsies of the small intestine.

While increased lymphocytes are not specific to Celiac Disease - the increase caused in reaction to gluten ingestion is the first indication of Celiac Disease and precedes tissue damage....

Lastly, I could see the "first indication" possibility as helpful in cases where the patient is ambiguous about gluten, but KikiB is apparently past that.

I'm really surprised at how my reactions to gluten are getting worse over time.

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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

KikiB, I understand your feelings. I went gluten free after PCP said no to blood work and wants me to have endoscopy and colonoscopy (can't afford and it doesn't change treatment). Then four days later my endocrinologist says that she will order it with my other labs, so I'm back to eating it and wondering how I was surviving and just accepting of feeling this way before.

My blood tests were negative, but my doctor still wants me to have the endoscopy. I will call and ask about getting in earlier -- that's a good idea.

I'm really surprised at how my reactions to gluten are getting worse over time.

I have to say that I think your doctor is remarkably unique and enlightened. He really wants to help you get a DX.

We often hear others report that doctors say "blood work is negative, therefore, you can't have celiac" (that assumption nearly killed me). As a result, listening to my former GI doc kept me ill for 12 years.

It must be hellish to go through a gluten challenge (I could never do it now), but unless he is willing to DX you based onsymptoms alone, it seems as if this is your only choice right now.

For what it is worth, (and this is just my opinion) I would try to stick it out and go for the best possible diagnostic outcome.

If you get really ill and unable to function, then, maybe you need to bag it. Sadly, it comes down to this: how important is a "real" DX to you?

I would also call my doc and beg for a quicker appointment and he is the kind of guy who give it to me.

Hopefully, yours can see you sooner.

Best wishes. I feel for you going through all this as I know how awful you must feel.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

Did the Dr specifically say to keep eating gluten after the blood test? There's certainly a case to be made that actual tissue damage can't go away as quickly as a threshold level of antibodies.

My first response to Tom was for the benefit of the OP along with anyone else reading it that may be struggling to obtain a diagnosis. My intent was to explain that the endo can provide valid information even before there is significant tissue damage.

Tom-The specific problem I have with your post is that it suggests that the OP needn't remain gluten-free to give the doctor/endoscopy/biopsy the BEST opportunity for accuracy.

I don't see how this suggestion is helpful to someone new to Celiac Disease and to the procedures currently utilized to diagnose. She has not had years to research these processes and certainly shouldn't have to explain her choices during an already confusing time.

She came to celiac.com to find information and help with what the best course of action would be. If I remember correctly she removed gluten for trial after the negative blood work - found out she was going to have and endoscopy within the month - was told (might have been by me) that she needs to continue ingesting gluten until the endo - checked with her doc and decided it was the best course for her to continue eating gluten for the weeks leading up to the endoscopy.

To my knowledge - no one has suggested she needs to continue eating gluten if she can not tolerate the reactions.

If you want to have a discussion about the time it is necessary to be gluten-free for the endoscopy to be invalid - perhaps you can start another thread. That would be a valid conversation to have without adding confusion to an already confusing time for someone trying to obtain a diagnosis.

My first response to Tom was for the benefit of the OP along with anyone else reading it that may be struggling to obtain a diagnosis. My intent was to explain that the endo can provide valid information even before there is significant tissue damage.

Tom-The specific problem I have with your post is that it suggests that the OP needn't remain gluten-free to give the doctor/endoscopy/biopsy the BEST opportunity for accuracy.

I don't see how this suggestion is helpful to someone new to Celiac Disease and to the procedures currently utilized to diagnose. She has not had years to research these processes and certainly shouldn't have to explain her choices during an already confusing time.

She came to celiac.com to find information and help with what the best course of action would be. If I remember correctly she removed gluten for trial after the negative blood work - found out she was going to have and endoscopy within the month - was told (might have been by me) that she needs to continue ingesting gluten until the endo - checked with her doc and decided it was the best course for her to continue eating gluten for the weeks leading up to the endoscopy.

To my knowledge - no one has suggested she needs to continue eating gluten if she can not tolerate the reactions.

If you want to have a discussion about the time it is necessary to be gluten-free for the endoscopy to be invalid - perhaps you can start another thread. That would be a valid conversation to have without adding confusion to an already confusing time for someone trying to obtain a diagnosis.

Thanks, Lisa. I really appreciate how helpful you have been! I was off gluten for about 9 days, but went back on thanks to you and the board. If I can make it, I would like to get a diagnosis. As it is, I'm a little concerned the GI won't find anything because it hasn't been long enough. The majority of my symptoms started after I got mono in April (I read that viral infections can trigger Celiac). But I'm going forward. I do better when I only eat gluten at night, so I can just go to bed and sleep through the worst of it. I do worry that I'm not eating enough of it -- that part seems to vary so much.

KikiB, I understand your feelings. I went gluten free after PCP said no to blood work and wants me to have endoscopy and colonoscopy (can't afford and it doesn't change treatment). Then four days later my endocrinologist says that she will order it with my other labs, so I'm back to eating it and wondering how I was surviving and just accepting of feeling this way before.

Thanks, Davina. My reaction to gluten continues to surprise me. I swear it gets worse by the day. Hang in there!

I have to say that I think your doctor is remarkably unique and enlightened. He really wants to help you get a DX.

We often hear others report that doctors say "blood work is negative, therefore, you can't have celiac" (that assumption nearly killed me). As a result, listening to my former GI doc kept me ill for 12 years.

It must be hellish to go through a gluten challenge (I could never do it now), but unless he is willing to DX you based onsymptoms alone, it seems as if this is your only choice right now.

For what it is worth, (and this is just my opinion) I would try to stick it out and go for the best possible diagnostic outcome.

If you get really ill and unable to function, then, maybe you need to bag it. Sadly, it comes down to this: how important is a "real" DX to you?

I would also call my doc and beg for a quicker appointment and he is the kind of guy who give it to me.

Hopefully, yours can see you sooner.

Best wishes. I feel for you going through all this as I know how awful you must feel.

So your blood tests were negative, too? I am going to keep going and get through this. Thank you for the encouragement!